Why I'm Not A CFS Activist

[Guest guest]

My recent exchange with Kat raises a larger point.

When I started getting better a couple years back, I thought

seriously about becoming an activist for CFS/ME. It would have been a

natural fit. I'm a journalist, have done PR, was raised in a

political family, know my way around the policy process, am a first-

rate public speaker, and know how to do some fundraising besides.

So I started to put myself in the online places where the activists

gathered, researched the history and issues, and tried to figure out

where I could contribute.

What I found was beyond depressing. I've been involved in progressive

politics long enough to know a circular firing squad when I see one

-- but I have to say that, in all my life, I have never seen one as

tight, twitchy, and deadly effective as the one formed by the people

who advocate for our disease. After several months, I realized there

WAS no place for me -- not if I valued my health or sanity. And I

also realized that the extreme emotionalism and anger was probably

long-term insurance that nothing politically productive will EVER be

done for our disease, except occasionally by accident.

A lot of these " activists " seem to spend much of their time mired in

rage over insults received and opportunities missed 20 years ago.

They get so stuck there that they seem to find it very hard to deal

with the present situation. Those of us who say, " Well, OK, that's

over and done. Here's what it is NOW -- let's deal with that " usually

get long lectures about how we don't appreciate how awful it all was

Back Then. I'm not dealing with Back Then. There's more than enough

trouble Right Now without borrowing it from the past; and I can do a

hell of a lot more about today's trouble than I can about last year's.

These people definitely deserve apologies. They have been cut to the

bone by some truly horrific history. But they are not going to get

apologies, probably ever. It's a waste of time to wait for them, or

demand them -- but demand them they do, from just about anybody who

walks onto the scene.

The best they can do is get closure for themselves, and move on. I

know all about this: I've lost half my life to this disease, too. I'm

also enraged about what it's cost me. I had a dazzling future -- one

in a thousand in many respects -- and it coming to terms with the

grief is one of the hardest things I've ever done.

But (here's where I'm really gonna get it -- and why this post is

germane to this list) that's where CBT actually did help. It allowed

me to accept my reality, put the grief in perspective, and get on

with making the most with my life as it is. I can spend my days

nursing the festering pustule of decades-old anger, and let it

consume what's left of my spirit. Or I can use what time and energy I

have to love my husband, mother my kids, write when I can, look for

more ways to get better, go to school, and make the contribution I

can make. Same life, same energy, same limitations -- very different

choices.

My life is too short to waste on rage at a past that's over, or a

disease I can't cure. It's also too short to spend throwing myself

against the machine on behalf of people who don't know how to be

politically effective themselves, but are great at taking out anyone

who might actually know how to change the status quo.

Sara